More concerned than reassured

I'm recently diagnosed as hypo and found this site hoping I would get some advice on living with the condition. Quite honestly, I am finding it no help. It seems to consist of people saying Levothyroxine either doesn't help, or makes them worse and Doctors don't know what they are talking about. What medical qualifications do the people who answer these posts have? I have been prescribed 50mcg to begin with, (I'm over 65 so lowish dose recommended to start) My GP is very sympathetic and assures me that I will improve over time but reckons it will take the best part of a year as the condition has been developing for a long time. She also gave me 2months supply of 10,000 IU Vit D and I am to have another blood test to check homocysteine levels. Does anyone have anything positive to say about Levothyroxine? Surely some patients improve with it.

16 Replies

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  • Hello Mrs DG and welcome to the site.

    Perhaps this link to the main TUK site may help "getting a diagnosis and starting treatment"

    thyroiduk.org.uk/tuk/diagno...

    The majority of people find Levothyroxine suits them just fine so they probably won't be researching about it or be on this, or other Thyroid forums.

    Best Wishes

    Jane :D

    just a hypothyroid non-medical person here

  • Of course some patients improve on it. But, you won't find those patients on here. Thyroid forums are for people who don't do well on levo, who can't convert, who have undiagnosed nutritional deficiencies, who have adrenals problems, and all the other things that doctors don't know anything about - and I'm very sorry, but doctors are hugely under-educated on thyroid. That is a fact. If you do well on levo - which you probably will - you won't have any reason to doubt your doctor. But, if you don't do well on it - and a small percentage of us don't - and your doctor starts telling you you're imagining it, it's all in your head, you're just depressed and need to see a psy, then you might just change your mind.

    People who do well on levo are not, for the most part, sitting in front of their computers, on a beautiful sunny day, talking about it. They are off living their lives. We odd-ones-out, tend to spend most of our time looking for answers, solutions, reasons as to why we don't do well. And we don't need to be medically qualified to find a lot of those answers - it's all out there, somewhere, we just have to find it. And, the result is, we end up knowing more about the subject than the doctors who are supposed to make us well. I'm sorry, but that's fact.

    You are right at the beginning of your journey - and, by the way, 50 mcg is a normal starting dose, it isn't low - you still have a long way to go. When did your doctor say to get retested? It should be six weeks after starting levo. Did she tell you how to take it? Did she tell you how to take the retest? There are so many things that doctors just don't know about all this, because they didn't do it in med school.

    So, I'm sorry if we've disappointed you, but we are here for a reason. And, it would seem, for the time being at least, you don't need us. But, if you ever do have any unanswered questions, we'll still be here. :)

  • MrsDG It stands to reason that the patients getting well on Thyroxine will have no need for a thyroid support forum. None of us are medically qualified and that is made very clear in the blurb when you signed up.

    We are sharing experiences and many of us have found the NHS to be worse than useless as regards thyroid disorders, that includes GPs and Endocrinologists. Many folk find their health improves from implementing what they read on here.

    The best thing you can do is to educate yourself and not rely on the NHS who believe that numbers on a lab report equate to doctoring.

    Presumably your GP failed to recognise your hypothyroidism so, really, why would you trust her?

    Scroll down the left side of this link, any questions please ask:

    thyroiduk.org.uk/tuk/index....

  • Mrs DG. I'm sure you will be fine on Levo; most people are. But there are many who aren't, and experience has taught us that most doctors do not have the knowledge to offer answers to those who do not progress well. They are not trained in nutrition, so do not understand the importance of optimum levels of certain minerals and vitamins. Nor do they understand that T4 (Levo) is a storage hormone and needs to be converted to T3 ( the active hormone). And even if they do, professional dogma prohibits them from admitting it. Here, there is a wealth of experience gathered over many years of trial, error and diligent research. Like many others, my own doctor is hopeless when it comes to matters thyroid. I would not trust him to diagnose a boil.

  • There are many people who are well on levothyroxine alone but no one really knows the percentage. The royal college of physicians suggest that 90% of patients are fine on levothyroxine only, but other research suggests 70%. It is the nature of support forums that people who aren't well look for additional information.

    You are off to a good start with a sympathetic gp who also recognises the importance of vitamin d, who has also taken the time to explain the condition and give you a realistic time frame to reach optimum treatment. He/she has also started you on a sensible dose. Did your gp check for thyroid peroxidase antibodies? If these are raised you have hashimoto's disease which is an autoimmune condition that causes destruction of the thyroid. Many people find going gluten free can reduce the antibody levels. It is also helpful to know what your iron, ferritin and vit b12 levels are, as this will help your body to utilise the levothyroxine and convert it into the active hormone t3.

    Goodluck

  • I do not have much more to add as the comments above me sum it up perfectly.

    However, I would like to say that whilst I am very happy for you doing so well, I would ask that you do not judge the rest of us, in that we should all be feeling as you do. Most of us do not and the help and support we get on here is invaluable and not provided, in the most part, from our GPs.

    May I suggest that if your GP is so helpful and sympathetic then she is your best bet to guide you and tell you how to manage because if you have no problems this forum will not be much help.

    I hope you continue to do well, you are lucky.

  • Welcome to the forum, MrsDG.

    This is a patient to patient forum and no one, including the Admin team, on this community should be assumed to have medical training of any sort.

    Everyone is only speaking from their own experience, that of friends/family or other people they may have spoken to.

    Content on this site does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

    Views expressed are those of individuals and not of Thyroid UK.

    healthunlocked.com/thyroidu...

    Most patients do improve on Levothyroxine once they are optimally medicated but not all GPs warn their patients that it may take time for symptoms to resolve.

    For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

    It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

    You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

    thyroiduk.org.uk/tuk/about_...

  • Mrs DG

    Do carry on taking the tablets. Your GP has advised you that a return to wellness will take time; many GPs are shockingly clueless about thyroid conditions, largely because they have been told that taking levo and the TSH test are the gold standard for recovery from hypothyroidism.

    and

    peoplespharmacy.com/2015/01...

    So you see we don't all get better on levothyroxine monotherapy. For some of us, levothyroxine actually makes us worse and that's where the problems start. We are told to go away and rejoice because our blood tests are 'normal'. Some of us end up doing our own research and spending hundreds if not thousands of pounds a year on our own treatment, because the nhs will not assist but we want to feel well and are left with no alternative. Some of us can't manage to do this and are left in pain, depressed, breathless, wheelchair bound and exhausted.

    This is a patient cohort and although we occasionally have input from enlightened and medically qualified practitioners, these are rare interjections.

    We are not hypochondriacs. It is not all in our heads. But too many of us are dealt with by conventional medicine this way and often the only support we have is other sufferers, who similarly do not respond well to levothyroxine.

    I would suggest that this forum is not the best place for you to start. The main thyroid UK site, here thyroiduk.org.uk/tuk/index.... may be much more appropriate.

    I won't trouble you further with refutations as to the value this site has beyond this final point. Without this site and the wisdom I have gained from the many wise, albeit medically unqualified, generous posters my 'life' would not be worth living.

  • Our main websit is Thyroiduk.org.uk and I'll link you to it as you may find, as a newly diagnosed person, more conducive.

    On this forum, as you will have realised by now is that it is mainly those who haven't recovered with levothyroxine and millions worldwide do fine and they certainly wont be on this or any other thyroid forum:)

    Those who haven't recovered or improved on levothyroxine have found the forum beneficial as it has enabled them to try options after being on levo for a long time and being told that there was nothing other than levothyroxine.We have found out that there can be an option but the NHS will not prescribe.

    Also no-one on this forum is medically qualified (as far as I am aware) and we can only can go by our own personal experiences.

    I am glad you have a sympathetic GP as that makes a big difference.

    When you go for your next blood test, and you may already be aware of the following, is blood test has to be the very earliest possible, fasting, you can drink water, and allow a gap of 24 hours between your last dose of levothyroxine and the test. This helps to prevent the GP adjusting your dose unnecessarily so.

    You should also have tested, B12, Vit D, iron, ferritin and folate as we can be deficient, which can also give us symptoms.

    Always get a print-out for your own records and you can post if you would like a comment upon them.

    Before this forum began, I was a patient who was more unwell on levothyroxine and with a TSH of 100 and after quite a number of weeks with even worse symptoms, particularly severe palpitations, than when I began taking it began to search and, thankfully, I reached Thyroiduk.org.uk. There was no forum of course, no asking/answering queries so, this forum is good in that you can ask/answer almost immediately. Through their website I slowly found and learned about hypothyroidism and treatment.

    Before levothyroxine was introduced in the 60's we were all prescribed a 'natural dessicated thyroid hormone' called NDT. It was made from the glands of sheep and contains all of the hormones a healthy gland would produce and was in use from 1892 till the 60's when the prescriptions for it were slowly reduced and stopped then forbidden and levo alone is the only product available although there are several companies that produce it. NDT contains all of the hormones a healthy gland would produce, i.e. T4, T3, T2, T1 and calcitonin.

    As your dose is slowly increased, usually by 25mcg every six weeks until you feel much better with no remaining clinical symptoms,

    thyroiduk.org.uk/tuk/index....

  • I found this site helpful supportive and extremely knowledgeable, my GP isn't supportive or even very knowledgeable from here I have learnt a lot and taken documents in (to educate him) I have received (I think) better treatment because he knows I have done my research which is from the EXPERIENCED people on here who willingly pass on Information in their own time and without any PAYMENT whatsoever all I can say is lucky you you are doing so well!!

  • Advice is available but you either need to accept that much of what is said doesn't apply to you, and just keep reading, or ask questions.

    Out of the air, I suggest:

    Some people take levothyroxine-only despite having liothyronine (T3) and desiccated thyroid (Natural Desiccated Thyroid, porcine thyroid) readily available. Me.

    Some people take their levothyroxine at bed-time and feel is is better for them. I simply take it at bed-time and have never seen any reason to change.

    Always make sure you get the same make dispensed. When I started I was determined not to care - just take whatever I was given. Experience has shown me that even simple cases cannot readily switch makes without finding problems.

    How come you were allowed to go downhill?

    When it comes to doctors not knowing what they are talking about, I have seen first hand how utterly incompetent some are. Things like a specific doctor simply not knowing whether a dose should be raised or lowered - rabbit in headlights style frozen and confused. Another doctor insisting that hypothyroidism is rare.

  • Many of us complete our Profiles - so click onto a name in a post and you can read more about the person and perhaps have a better understanding of what it takes for some of us to find wellness. Learning something new everyday is something I value very much and I have learnt more in the last few years since joining this forum than I have in a lifetime of illness .... I am 71 this year :-)

    So do complete your Profile so we know more and it will help you in the future as you will not have to repeat your story .... so click onto my name and have a read :-)

  • Michael Mosley on "Trust me I am a Doctor" said "I get far more letters and emails about Thyroid problems than any thing else"

    This was at the opening to his investigation into thyroid issues a month or so ago

    This Health Unlocked forum has huge number of members (current over 55,000 & growing rapidly) & is by far the busiest, with many many posts a day.

    Even the medics admit to 10-15% of Thyroid patients not doing well on standard treatment. In reality it's probably as high as 25-30% as many just put up with very poor health & limp along.

    Your lucky your GP knows the relevance of low vitamin D, many of us never had levels checked & thyroid hormones need good levels of vitamin D to work (as well as folate, B12 & ferritin)

    Like many, the advice I have had here to look at & improve vitamins and, as I have Hashimotos, to go gluten free has really been a life saver. None of this was ever suggested by any medic

    Thank your lucky stars that Levo appears to work well for you. But if you need help in future this NHS support group may be invaluable

  • Hi im very anti drugs like natural medication so didnt take being hypo lightly im on 75 mg levo my taste has come back in not as tiered as i was but still need my bed at times.iv found good points and bad but think this drug takes time like ur doctor said mine did too she will be trying to get your levels right dont give up might be good for you too x

  • Speaking from my own (non-medically qualified) experience only, I have gone from thinking, very naively, that hypothyroidism can be controlled by just taking a pill every day to discovering that it is way more complex than that, and for that I have to thank the wonderful folks on this forum as well as the linked sites they've directed me to. I was diagnosed around 10 months ago and since then have been doing my level best, despite brain fog, to read as much as I can about the condition.

    I am still only on a low dose of Levo, like you, 50 mcg daily (started on 25 mcg last September), and there have been some improvements, definitely, but I'm 'not there yet' as they say! My GP is sympathetic enough, not as ignorant as some apparently are re thyroid conditions, but still, not clued in enough to see my vitamin/mineral test results (which I did privately) and see them as too low. They were 'in range' and that was good enough - except I have found out since it isn't good enough, so now I am in the process of supplementing.

    You're fortunate that your GP at least spotted your Vit D deficiency. All I can say is that getting a thyroid diagnosis is only the beginning of the journey, one that may take you in directions you aren't expecting. It's good to keep an open mind, and as someone further up said, we will be here if you need us for advice or just moral support. :)

  • Thank you for your reply. I know hypothyroidism is a complex matter and different for everyone. I shall continue to trust my GP as she has always listened to me and respected what I think. I don't expect to be 'full of beans' on treatment as I have other long term painful conditions but at least I feel this is something that can be treated.

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